Patient and Family Advocacy in Cleft and Craniofacial Care
Working with patients, families, and advocacy groups to champion change.
Siva Chinnadurai, MD, MPH, Rajanya S. Petersson, MD, and Brianne B. Roby, MD, on behalf of the Otolaryngology Cleft and Craniofacial Committee
Members of the Otolaryngology Cleft and Craniofacial Committee regularly partner with families and organizations on this advocacy work. Organizations like Ear Community, cleft family camps, and opportunities for organized efforts like state lobbying days, exemplify how grassroots efforts can shape priorities and drive advocacy for crucial needs ranging from emotional support to insurance coverage.
Understanding Patients’ Challenges to Improve Care and Support
Partnering with patient and family groups offers healthcare practitioners invaluable insight into the lives of children and adults with microtia (missing or underdeveloped ears) and atresia (absent or underdeveloped ear canals resulting in hearing loss). By seeking to understand the challenges faced by patients and their families—such as navigating stigma and overcoming insurance barriers—physicians can gain a deeper understanding of how these conditions impact their daily lives. This connection not only informs clinical care but also helps highlight critical gaps in support.
Legislative Success: Establishing National Microtia and Atresia Awareness Day
Siva Chinnadurai, MD (center) with Ear Community Executive Director Melissa Tublin (left) and Program Director Caitlin Hurst.
Ear Community has also partnered with physicians around the country to host microtia and atresia picnics. Bringing affected people together creates psychological benefits by fostering a sense of social inclusion. Having healthcare professionals participate in these events helps demonstrate that we can be collaborative and supportive, rather than judgmental or paternalistic.
Amplifying Patient Voices in Medical Spaces
Likewise, physicians can play a pivotal role in amplifying the voices of patient advocacy groups. By bringing patients’ voices into spaces traditionally reserved for medical professionals, such as national scientific meetings, physicians can help ensure that patients’ perspectives on their needs are heard. In addition, incorporating advocacy groups as key stakeholders in patient-centered research enhances the relevance and impact of these studies. By working together, physicians and advocacy groups can co-create solutions, set meaningful priorities, and drive systemic changes that improve the lives of individuals.
State-Level Advocacy: A Model for Legislative Engagement
Left to right: Kelley Dodson, MD, Raj Petersson, MD, and Tom Gallagher, MD, representing the Virginia Society of Otolaryngology.
Community-Based Advocacy and Support Networks
Finally, advocacy can be found in local contexts, such as your local community and individual hospitals. Many cleft and craniofacial programs have established a special day or week when younger patients can connect while older patients and parents can develop contacts to help navigate challenging healthcare scenarios.
Minnesota cleft family camp. Left photo: Zayla and her dad participating in fishing. Right photo: Author Brianne B. Roby, MD, (center) and Sean and Liam.
Advocacy at Every Level
These diverse examples highlight that advocacy is important at every level and we as the Otolaryngology Cleft and Craniofacial Committee are actively engaging on all these levels. Engaging with and advocating through community-based, local, and state activities can help support and advance the bigger national challenges that affect our patients’ health.